Arthritis – a guide for teenagers Arthritis – a guide for teenagers

52 Pages·2011·4.47 MB·English

Self-help and daily living
Arthritis – a guide
for teenagers
Arthritis – a guide
for teenagers
This booklet provides information
and answers to your questions
about living with this condition.
What should I know
about arthritis
in my teens?
If you’re a young person with
arthritis (aged 13–20), then this
booklet is for you. Inside we’ll
give you basic information about
juvenile idiopathic arthritis (JIA) and
what to expect from the condition
and its treatments. We’ll also offer
advice on the important issues
when growing up with arthritis
and direct you to other sources of
help, including other organisations
and useful websites and booklets.
At the back of this booklet you’ll find a brief glossary of
medical words – we’ve underlined these when they’re
first used in the booklet.
www.arthritisresearchuk.org
Arthritis Research UK
Arthritis – a guide for teenagers
What’s inside?
2 A bout this booklet 32 Individual Education Plans
and Statements of Special
Part One: About juvenile
Educational Needs
idiopathic arthritis (JIA)
Part Three: How to find
2 W hat is juvenile idiopathic
out more
arthritis (JIA)?
33 Money matters
3 What causes JIA?
34 Learning and training
3 Are all joint pains due to JIA?
36 Work
3 How is JIA diagnosed?
– What tests are there? 37 Driving and getting around
4 W hat are the different types 39 Glossary
of JIA?
42 Where can I find out more?
9 What effects can JIA have
48 W e’re here to help
on my body?
11 What treatments are there
for JIA?
– Medicines
– Physiotherapy and
occupational therapy
– How can I help myself?
– Will I need surgery?
23 W hat is the outlook?
Part Two: Growing up with JIA
25 About your general health
28 Who can I talk to?
30 The changing relationship with
your doctor
30 When should planning for
transition start?
Even if you’re over
16, doctors will
About this booklet
still use the term
If you’re a young person with arthritis
JIA because it’s
(aged 13–20), then this booklet is for you.
The content has been driven by recent different from
research involving young people with adult arthritis.
arthritis, like you, and what they said
they wanted to know. It was written
by a group of people, including doctors,
physiotherapists, occupational therapists
and nurses, who regularly look after
young people with arthritis. If we’ve left
anything out or if you have any comments
about the booklet please get in touch
so we can continue to improve the
Part One: About
information we provide for young people
like you (see Where can I find out more? juvenile idiopathic
section of this booklet).
arthritis (JIA)
The booklet is divided into three parts:
Part One explains what arthritis means This section explains what JIA means
for young people, including the main as an illness affecting young people.
types and treatments. It describes the main symptoms, the main
types of JIA and the different treatments.
Part Two discusses how arthritis can
affect the way you grow up.
What is juvenile idiopathic
Part Three offers practical advice and
details of other sources of information arthritis (JIA)?
if you’re looking for help with benefits,
JIA is the short name for juvenile idiopathic
learning and training, work or driving.
arthritis. But what does the name mean?
Throughout the booklet you’ll hear about • Juvenile means that the arthritis began
the real life experiences of three young before you were 16 years old.
people with arthritis: Mandy* (aged 14),
Louise (aged 23) and Nicholas (aged 17). • Idiopathic means that the cause
We hope you find their stories encouraging. is unknown.
(*all names have been changed).
• Arthritis means that one or more
of your joints are inflamed (i.e. they’re
swollen, painful and stiff, and you may
not be able to move them as far
as normal).
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Arthritis Research UK
Arthritis – a guide for teenagers
The term JIA is relatively new and How is JIA diagnosed?
so you may hear older terms used,
There’s no test for JIA. Your doctor will
such as juvenile chronic arthritis (JCA)
ask questions and examine you, and this
and juvenile rheumatoid arthritis (JRA).
will help to rule out other types of illness
These mean exactly the same thing.
that can cause joint pain. You may have
The new term is now used by doctors
a number of tests, including some of
worldwide to describe the different forms
those listed below.
of arthritis in young people.
What tests are there?
What causes JIA? Let’s have a closer look at some of the
tests you might need:
To be honest, we don’t know the exact
Blood tests – are often used to
cause of JIA. There’s no clear evidence
make a diagnosis. These can look for
that it’s inherited (runs in families),
the following:
but we do know that a young person’s
genetic make-up (the genes inherited • Haemoglobin – a test for the red blood
from parents) is a factor. pigment haemoglobin. A lack of this
is called anaemia. When there’s a lot
There’s also no evidence that an infection
of inflammation, young people can
causes JIA. Sometimes children and
become anaemic, causing them to
young people may have had a sore
feel tired.
throat or other infection just before they
developed JIA, but so far no link has
been proven.
We think that JIA is due to a combination
of genetic factors and trigger factors from
the environment, for example an infection
that hasn’t yet been identified.
Are all joint pains due
to JIA?
No, not all joint pains are due to arthritis
and not all forms of arthritis are JIA.
Joint pains in young people are common
and in most cases don’t last long and
cause no long-term problems. In fact,
it’s really uncommon for arthritis to
be the cause of joint pain in children
and young people.
• Erythrocyte sedimentation rate (ESR) – (see What are the different types of JIA?
this is one type of test for inflammation section of this booklet).
but it’s not specific for arthritis (i.e. the
level can be raised in other situations Mandy (aged 14)
such as a bad throat infection). Similarly,
‘My arthritis started when I was 8 and
C-reactive protein (CRP) is another test
it affected my knees. I remember them
for inflammation but isn’t specific
being really swollen and feeling very
to arthritis.
heavy, but they didn’t hurt much.
• Autoantibodies – these are proteins I didn’t feel I was ill but I knew my
in the blood that are present with types mum and dad were really worried
of arthritis but can also be found in about me. I went to the hospital and
some healthy people. Other antibodies saw the doctor, who told me and my
checked for include: mum that I had arthritis.’
• rheumatoid factor, which may
be found in a few teenagers with
polyarthritis (arthritis in many joints) What are the different
• a nti-nuclear antibodies (ANA), which
types of JIA?
may indicate the possibility of uveitis
(inflammation of the eye). There are several different types of JIA,
some of which are milder than others.
X-rays – x-rays of the affected joints are
You’ll need to know which type you have
usually needed to allow the doctor to look
because this will help your doctor to plan
at any joint damage that you may have.
your treatment and give you advice. Let’s
Ultrasound and magnetic resonance have a look at the different types of JIA:
imaging (MRI) scans – ultrasound scans
(similar to scans of babies in pregnant Oligoarthritis
women) and MRI scans are other ways This is the most common form of JIA.
to look at your joints. But what does the name mean?
Aspiration of a joint – this is where the Oligo = few.
fluid from a swollen joint is removed
So this form of JIA is where only a few
to be tested in a lab, to check for
joints (less than 5) are swollen.
possible infection.
Other tests – sometimes you may need Who gets it?
to have other tests such as a chest x-ray Oligoarthritis most commonly develops in
or a heart scan (called an echocardiogram) under-5s, and girls are affected more than
that look for inflammation of the covering boys in this age group. In older children
of the heart (pericarditis), which can (for example age 8 and above), this type
occur in the systemic-onset type of JIA of arthritis is more likely to affect boys.
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Arthritis Research UK
Arthritis – a guide for teenagers
Key information checks with an ophthalmologist
What you should know about oligoarthritis: (eye specialist). This eye inflammation
• Oligoarthritis affects about two-thirds doesn’t cause a red or painful eye but
of children and young people with still can cause reduced vision if it isn’t
arthritis and most commonly affects treated. This is why regular checks
one or both knees. are important.
• This form of arthritis is often mild and Polyarthritis JIA
is the most likely to go away and leave
This is the next most common type of JIA.
little or no damage to your joints.
But what does the name mean?
• This type of arthritis has the highest
Poly = many.
chance of you developing chronic
So polyarthritis is where many joints
anterior uveitis (inflammation of
are swollen.
the eye), so you’ll need regular eye
Arthritis Research UK Oligoarthritis and
Arthritis – a guide for teenagers
polyarthritis are
the most common
types of JIA.
Who gets it?
Polyarthritis can begin at any age.
When it occurs in the teenage years,
particularly in girls, it may be very similar
to adult-type rheumatoid arthritis.
Early treatment to slow the disease and
prevent long-term damage is important.
Key information like methotrexate to keep this damage
What you should know about polyarthritis: to a minimum (see What treatments are
• This type of JIA tends to cause painful there for JIA? section of this booklet).
swelling in the fingers, toes, wrists,
Enthesitis-related JIA
ankles, hips, knees, neck and jaw.
This form of JIA affects the places where
• It may come on suddenly or can
tendons attach to the bone (these
steadily involve more joints over
places are called entheses), causing
a period of months.
inflammation. It often affects the joints
• You may feel unwell and tired and of the leg and spine.
occasionally develop a slight fever.
Who gets it?
• The symptoms may grumble on into
Enthisitis-related JIA usually affects boys
adult life but it can go into a state
more than girls. It often starts in the early
where all the symptoms disappear.
teenage years.
This is called remission.
• A blood test will show whether Key information
a marker called rheumatoid factor What you should know about enthesitis-
is present in your blood. related JIA:
• In contrast to the uveitis seen with
Extended oligoarthritis
the other types of JIA, this type of JIA
Key information is associated with a red painful eye –
What you should know about acute uveitis.
extended oligoarthritis: • You may develop stiffness in the neck
• With this form of JIA, you have and lower back in your teens or as
oligoarthritis in the first 6 months a young adult.
and then develop problems with
• There may be a family history of
many joints (5 or more) after that.
ankylosing spondylitis or inflammatory
• This type of JIA can cause damage bowel disease because of a particular
to your joints and your doctor may genetic marker called HLA-B27.
suggest early treatment with drugs
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The symptoms
of your arthritis
can vary from
day to day. Who gets it?
It can affect children and young people
at any age, with boys affected as much
as girls.
Key information
What you should know about systemic-
onset JIA:
• In this form of arthritis, joint pain is
Psoriatic arthritis part of a general illness involving fever,
Psoriasis is a scaly skin rash, and with tiredness, rash, loss of appetite and
this you can also get joint pain known weight loss.
as psoriatic arthritis.
• You may have enlarged glands in your
neck, under your arms and around
Who gets it?
your groin area. Your doctor may find
This type of JIA usually develops at
your spleen and liver are enlarged, and,
around 8–9 years old and is more
very occasionally, the covering of the
common in girls.
heart is inflamed.
Key information • In the first few weeks there may be no
What you should know about sign of swollen joints, and the diagnosis
psoriatic arthritis: may be uncertain. Lots of tests may
• This arthritis usually affects the be needed to confirm the diagnosis
and this can be a worrying time.
fingers and toes, but it may affect
other joints too. • The long-term development of this
• Uveitis is also fairly common but it’s form of JIA can be difficult to predict
but usually the fever and rash will
the painless type that doesn’t look red.
settle, although the arthritis may
• The joints may be affected before the
sometimes grumble on for several
skin rash appears – your doctor may
years before settling.
look closely at your fingernails and
toenails for early signs of psoriasis Undifferentiated arthritis
and may ask if anyone in your family
Sometimes young people don’t fit neatly
has the condition.
into the above groups and the condition
is defined as undifferentiated arthritis.
Systemic-onset JIA
It may not seem a very useful category,
This is the rarest type of JIA.
but it’s one that doctors sometimes
have to use.
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